Reduced Dose

[Bozema]

Well I saw my doctor this week and we have reduced my dose of cyclosporine from 300 mg per day to 200 mg (100 mg morning and night). It felt like the right time to start toning it down and I'm glad for the change. I've had a few fingernail infections and a stubbed toe recently that were tough to heal and then just before I went to the doctor I developed folliculitis (infected hair follicles) under my arm. It looked like a swarm of bees attacked my arm pit and it felt like it too. I am on keflex to clear that up and it still looks bad but doesn't hurt nearly as much as a few days ago. My doctor felt that this was a sign that my immune system is compromised just a little too much. Then there's the issue of the cyclofur. Though mine is very blonde and fine, and I had it waxed, I'm hoping the reduced dose will help with that issue too.

We had a long talk about where I am and where I'm going. I seem to be somewhat of an atypical IC patient as pain is my only symptom. I don't have urgency or frequency problems at all and have a bladder like a horse (I can hold it no problem for long periods of time). I have plenty of bladder capacity. The intense pain is there irregardless of how full or empty my bladder is. My flares only worsen with physical activity or when my period is due. The medications that work best for me are muscle relaxants and nothing calms a flare for me like a glass of wine or some heat. I have had bad reactions or no reactions at all to most typical IC medications (which I know by itself does not make me atypical). My one bladder instillation was a disaster in that it caused a terrible spasm on release and gave me no pain relief at all afterward. Change of diet does not seem to have any effect on me. I was doing my best when doing physical therapy and biofeedback. All of this started for me 2-1/2 months after a pelvic surgery during a period of extreme stress in my life. Cyclosporine? Well, the jury is still out on whether or not it's helping me much.

So where does this leave me? So after discussion with my doctor, I'm off to see Dr. Weiss at Pacific Center for Pelvic Pain and Dysfunction in San Francisco. We talked about different possible referrals for me and I felt it was time to take a broader view of what's going on with me. My former PT trained with Dr. Weiss and while I was seeing her, I was doing my best. It could be that my issue is pelvic floor dysfunction (with or without IC) and it feels like the right choice to make. I feel good about this choice and my doctor agrees it's a good route to take.

I also got him to prescribe the valium suppositories discussed by Dr. Brookoff here on ICN - I'm going to give them a try. Thanks ICN for another option for relief.

So for now, sticking with cyclosporine but not sure where it will lead....I'll keep posting my experiences here as I move forward.

On to the next step.....


-Laurie

[ICLori]

Laurie, I know it's been a long, difficult journey - we seem to be going down the same path, really. I hope so much that Dr. Weiss will be able to help you. I'm thinking about how great it would be if you were able to post in a few months, that you don't have any pain anymore at all.

Blessings,
Lori

[IcyAngel23]

Sorry to hear you're going thru a tough time. Sounds like you made the right choice. We all seem to be having weird stuff happening to us on CYA. I"m not sure if I'm going to stay on it or not. I'm still on the fence with it but are you guys thinking about stopping it too?

[Bozema]

Actually I am not in a flare right now and feeling pretty decent - I wonder, the antibiotic effect? Whatever, I'll take it for however long it lasts. We have some fun plans this weekend and I'll be able to enjoy them.

And all things considered, I'm feeling pretty hopeful about things. I feel like I'm on the right path and going to see the right person for my situation. I'm scheduled to go on November 8.

I also found out that my old physical therapist is practicing again - I talked to her yesterday. Since she trained with Dr. Weiss, I'll be able to continue with her when I get back. That was extremely good news.

For now, I'll stay on the reduced dose of cyclosporine and the other medications I'm taking until I see my regular doc again in early December (unless something else comes up) and then we'll see. One step at a time.

In the meantime, I'll keep posting and I hope you both will do the same.

-Laurie

[ICLori]

Went into a flare, yesterday and today. But it's that time of month when I normally do flare quite a bit, so I guess it's expected. There's such a hormonal connection for me with this disease....maybe that doctor in Texas that talks about hormone allergies is on to something, who knows...

Laurie, I hope that the physical therapist will help you. It's great news that you'll be able to work with your original PT, you already know her and are comfortable with her...much better than having to find a new doctor...

Blessings,
Lori

[ICLori]

P.S. - quick question for Laurie - I noticed you and I have both not responded to the normal IC drugs. Have you ever had doctors doubting you, or thinking you were lying or crazy? It seems to me that many doctors do doubt me when I report that I get increased pain and symptoms with Elavil rather than decreased symptoms...it really kind of bothers me. I wish doctors could step inside of us and feel our symptoms, just so they would know for certain we weren't lying or crazy...

Blessings,
Lori

[IcyAngel23]

I always had drs looking at me like I was lying about the drugs not working. I wish people in my life could walk a mile in my shoes but I wouldn't want them to go thru what I go thru everyday. Sometimes I think most of the people in my life wouldn't survive being me which makes me feel better when I have those bad days. I try to stay positive I haven't gotten worse, which in my case is great. If I wasn't on CYA right now I would probably have to cath myself all the time as my ability to void was declining before I got on CYA. Before CYA I had weeks where I still had to cath but so far so good. It has done wonders for me in terms of me being able to go out more. I'm still spending most of my days in bed due to the pain,fatigue or nausea. I just have a bit more freedom. I'm just getting alot of pressure from my parents to stop taking CYA because they see me suffering and want to make it better. So I'm not sure what is best for me and this is the first time I can say that.

[Bozema]

Hi Lori-

Thankfully, I have not experienced doctors looking at me like I'm nuts. My first doctor believed me and I liked him but he didn't have time to work with me properly - the practice he was in was way too busy. I have a cousin who is a urologist in a town that is about 1-1/2 hours away. He referred me to his former partner who he said was good with IC patients - and he was right. He is my current doctor and he has always been wonderful. He listens and gives me all the time I need to get my questions answered. I am grateful I haven't gone through the hell that some folks here have gone through.

That pharmacist the other day though, with the suppositiories....another story...I may give that old biddy a piece of my mind if I see her next time.....


-Laurie

[Bozema]

Well, today a new twist to my story. I've developed an allergic reaction to the keflex I was taking for the folliculitis. So I have a rash head to toe. I stopped the keflex as soon as I saw the rash beginning - my last dose was yesterday morning. Today the rash is much worse. I called my uro - they are supposed to call back later today.

I am allergic to amoxilicillin, so I've been down this path before (I've had keflex before, so I did not expect this). They tend to give you prednisone to shut down the allergic reaction - but I'm thinking pred is not a good idea with cyclosporine - super hard on the kidneys for sure. I'm uninclined to go to my primary care phys on this one - he not going to know how to deal with the cyclosporine - so I'm hoping it doesn't get any worse and the uro will have the best advice as to how to proceed. My instincts tell me to ride out this rash - as long as it doesn't get much worse - and not take anything else. But if it gets worse, I wonder if pred is safe to shut down the reaction. I can't take benadryl - makes me hyper and my heart race - I don't handle antihistamines well generally. The itchy is not so bad that I feel like the trade-off is worth it. But some medical advice is definitely needed.

My other question relates to the folliculitis - it's better but not gone - and I did not finish the keflex.

Will let you know how this saga turns out. Arggh!!!

-Laurie

[ICLori]

Oh, man, I'm so sorry, Laurie.

I know that transplant patients take cyclosporine and prednisone together - so maybe it's not as dangerous as we think? Maybe a doctor might know more. You probably wouldn't have to be on predisone very long to get the rash under control - I think they would probably give you one of those standard blister packs....

But on the other hand, prednisone lowers your ability to fight infection, just like cyclosporine-A does, so....that's a bit tricky.

I hope that you feel better soon - :( I feel so bad for you, what rotten luck!

If it makes you feel any better, I'm sitting here with chipmunk cheeks because I just had crown lengthening done (gum surgery) on three back lower teeth. That's gonna hurt when the marcaine wears off...sigh. So we are both under the weather now...

Hope you feel better soon...(((HUGS)))

Blessings,
Lori

[Bozema]

Well back from the primary care and the decision was take claritin and let things resolve on their own over the next few days. She felt the folliculitis will clear up the rest of the way on its own with no more antibiotics. More concerning is that my blood pressure was high - 160/80 - it's never been that high before. I have always had low blood pressure so this has me very worried. It was a slightly elevated last week at the uro - 130/80. I'm seriously considering stopping the cyclosporine given all I'm going through. The primary care suggested I wait and have my blood pressure measured again in a week or so when I am healthier and not so stressed and when I've been on the reduced dose a little longer and then check in again with the uro - maybe a good plan.

-Laurie

[Bozema]

Lori -

Uggh - I'm so sorry - I hate dental work. I've put off a couple things because of the pain I've been dealing with - need some fillings redone and probably a crown on one - but won't be able to put if off foreever. So I understand. Hang in there-

-Laurie

[IcyAngel23]

Laurie-

I'm so sorry to hear that everything is out of wack for you.Did you ever consider getting off of cYA for a few days for everything to clear up?Everytime something goes wrong with me I have to do a two day break and it does make a differene. I think no matter what we take in terms of medicine it's going to throw our bodies out of wack. About two weeks ago I had my lips and my mouth covered in cold sores. Everyday it got worse so my dr put me on ayclovir which helped but its known to cause toxic blood levels. I started taking this after my last test(that's not the reason I had the toxic levels because i had it before taking it) and it took two weeks for the results so I'm sure that my blood levels were alot worse on the ayclovir. I always assumed the pharmacy would catch an interaction but they didn't. My uro nearly flipped out when he found out my primary dr presrcibed it. It's almost like we have to run every drug by our uro even if another dr prescribed it knowing your history. I really thought I was up on what not to take and watch out for. Even with all these problems I would still encourage others to try it. Not every treatment works the same for everyone. I just couldn't take away that possiblilty of that person finding relief when they need to believe in that most of all. Sending hugs and prayer out to you and Lori. Take care.
Hope you feel better soon.

[ICLori]

Laurie, I'm so sorry you are having the rash and blood pressure. It's always good to get it checked out several times, because sometimes we can just have a fluke reading and it might be caused by pain, or stress. On the other hand, CyA is known to raise blood pressure sometimes, so it's something to really watch out for.... I hope that things work out for you somehow. I have high hopes for the PT you will be going to, I hope they can get you into remission again soon!

Kristin, I find that a lot of doctors aren't very familiar with CyA and that pharmacists are a real Godsend in that case. I make sure I get all my meds from one pharmacy, and that pharmacy has a computer that automatically catches all possible bad interactions between drugs, so I feel safer that way. I'm glad that you posted this warning, though, for other people who might be trying CyA after us, because hopefully they won't have to cope with the toxic blood levels of CyA or anything.

I'm feeling okay today, I'm not even really sore or anything, but I'm all swollen on that one side and I can't open my mouth very far (had to have my mouth wide open FOREVER....I actually wore out one of the dentist's burrs because my bone was so hard! So it took him a long time to do the crown lengthening on the teeth....)...but otherwise I am fine, LOL! Looking forward to being able to eat regular food again instead of just ice cream and applesauce, LOL....

Blessings,
Lori